How long have you been suffering from CFIDS or Fibromyalgia symptoms?
0 to 1 year
45
2%
1 to 3 years
238
11%
3 to 5 years
359
17%
5 to 10 years
635
31%
11+ years
796
38%
2073
100%
4.
What is your chief complaint regarding how FMS/CFIDS affects your health?
Lack of Sleep
73
4%
Constant Pain
769
37%
Unrelenting Fatigue
412
20%
Inability to Function Normally
438
21%
Inability to be Productive
106
5%
Added Stress
43
2%
Other, Please Specify
232
11%
2073
100%
5.
Did you have a precipitating event, illness or trauma may have contributed to this illness?
Yes
1292
62%
No
781
38%
2073
100%
6.
How would you describe your spouse or family's support level and understanding of the nature of Fibromyalgia and/or CFIDS and how it impacts your lifestyle?
Poor
425
21%
Fair
682
33%
Good
604
29%
Excellent
362
17%
2073
100%
7.
What type of questions have you been afraid or embarrassed to ask concerning these illnesses? (We are not collecting any person specific data with this survey so feel free to answer)
1032 Responses
8.
What type of physician(s) have you seen in the past for your FM or CFIDs?
MD - Family Practice
1486
72%
MD - Internal Medicine
866
42%
MD - Rheumatologist
1317
64%
MD - Endocrinologist
297
14%
MD - Physiatrist
384
19%
MD- Speciality Fibomyalgia or Fatigue Practice
367
18%
MD - Other
260
13%
DO - Family Practice
327
16%
DO - Rheumatologist
159
8%
DO - Other
67
3%
DC - Chiropractor
804
39%
ND - Naturopath
245
12%
RPh - Pharmacist
192
9%
Other, Please Specify
615
30%
9.
What type of physician(s) are you seeing now?
MD - Family Practice
1063
51%
MD - Internal Medicine
455
22%
MD - Rheumatologist
509
25%
MD - Endocrinologist
115
6%
MD - Physiatrist
139
7%
MD - Speciality Fibromyalgia or Fatigue Practice
249
12%
MD - Other
122
6%
DO - Family Practice
151
7%
DO - Rheumatologist
45
2%
DO - Other
25
1%
DC - Chiropractor
312
15%
ND - Naturopath
62
3%
Other
46
2%
Other, Please Specify
512
25%
10.
How would you rate the current treatment you are receiving from your health care provider for your FMS/CFIDS condition?
Poor
538
26%
Fair
804
39%
Good
541
26%
Excellent
190
9%
2073
100%
11.
Does the physician that is currently treating your condition have ...
Specialized training with regard to FMS/CFIDS
444
22%
A large patient base with similar/same conditions
563
28%
Limited knowledge but still trying their best to assist you
942
47%
Other, Please Specify
408
20%
12.
How many medications are you currently on or have been prescribed to control your various symptoms?
None
190
9%
1 to 2 prescriptions
552
27%
3 to 5 prescriptions
690
33%
6 to 8 prescriptions
279
13%
8 + prescriptions
362
17%
2073
100%
13.
What medications are you currently on or have been prescribed to assist you with getting restful sleep?
Not Applicable
274
13%
Diazepam (Valium)
105
5%
Lorazepam (Ativan)
169
8%
Temazopam (Restoril)
111
5%
Clonazepam (Klonopin)
291
14%
Alprazolam (Xanax)
271
13%
Diphenhydramine (Benadryl)
178
9%
Zolpidem (Ambien)
461
22%
Zeleplon (Sonata)
75
4%
Trazodone (Desyrel)
298
14%
Mirtazapine (Remeron)
56
3%
Amitriptyline (Elivil)
478
23%
Doxepin (Sinequan)
73
4%
Other, Please Specify
951
46%
14.
How is your current treatment being paid for?
No Insurance - All Cash or Credit Card Payment
265
13%
Some Insurance - Remainder Cash or Credit Card Payment
555
27%
Mostly Insurance - Limited Out of Pocket Expense
832
40%
All Insurance Payment
207
10%
Other, Please Specify
214
10%
2073
100%
15.
What medications are you currently on or have been prescribed to control your pain symptoms?
Not Applicable
119
6%
Tramadol (Ultram, Ultrcet)
620
30%
Hydrocodone (Vicodin, Norco, Lortab)
584
28%
Cyclobenzaprine (Flexeril)
641
31%
Metaxalone (Skelaxin)
219
11%
Carusoprodol (Soma)
197
10%
Celecoxib (Celebrex)
417
20%
Rofecoxib (Vioxx)
303
15%
Valdecoxib (Bextra)
194
9%
Ibuprofen (Advil)
638
31%
Naproxen (Naprosyn)
431
21%
Citalopram (Celexa)
164
8%
Fluxetine (Prozac, Sarafem)
245
12%
Paroxetine (Paxil)
211
10%
Sertraline (Zoloft)
303
15%
Venlafaxin (Effexor)
307
15%
Gabapentin (Neurotin)
383
18%
Acetaminophen (Tylenol)
568
27%
Other, Please Specify
904
44%
16.
In addition to prescription medications, what other treatment(s) are you receiving? (Please select all that apply)
IV Therapy
105
5%
Trigger Point Injections
257
12%
Ozone Therapy
2
0%
Massage Therapy
594
29%
Physical Therapy
328
16%
Nutrition Therapy (Supplements)
588
28%
Hyperbaric Oxygen Therapy
3
0%
Other, Please Specify
1115
54%
17.
Please estimate the total cost for one months worth of prescription drugs (both RX and compounded) you purchase to treat your condition.
$0
100
5%
$1 to $50
468
23%
$51 to $100
349
17%
$101 to $200
359
17%
$201 to $300
225
11%
$301 to $400
132
6%
$401 to $500
72
3%
$500 +
150
7%
Comments
218
11%
2073
100%
18.
Please estimate how much you spend (CASH out of pocket) on treatments (besides prescriptions)for your FMS/CFIDS every year.
Less than $500
863
43%
$501 to $1000
418
21%
$1001 to $2000
284
14%
$2001 to $3000
200
10%
$3001 to $4000
96
5%
More than $4001
144
7%
2005
100%
19.
Do you believe that changes in barometric pressure (weather systems) affect your sense of well being?
Yes
1872
90%
No
201
10%
2073
100%
20.
What "alternative treatment" methods have you tried in the past?
Reiki
197
10%
Accupuncture
509
25%
Chiropractic Manipulation
1046
51%
Massage Therapy
1196
58%
Accupressure
307
15%
Other, Please Specify
831
40%
21.
In the past 6 to 12 months, do you believe that your condition has .....?
Improved Substantially
84
4%
Improved Moderately
167
8%
Improved Minimally
203
10%
About the Same
404
19%
Worsened Minimally
256
12%
Worsened Moderately
440
21%
Worsened Substantially
401
19%
Other, Please Specify
118
6%
2073
100%
22.
Rate the overall quality of your life before the onset of FMS/CFIDS and now. Scale of 1-7
1
Awful
2
Very Poor
3
Poor
4
OK
5
Good
6
Very Good
7
Great
N/A
1. BEFORE FM/CFIDS
1%
21
1%
24
1%
26
4%
91
10%
212
40%
830
41%
851
1%
18
2. PRESENTLY
15%
314
21%
437
34%
701
22%
464
5%
112
1%
31
1%
11
0%
3
23.
How has your FMS/CFIDS impacted your interpersonal relationships? On a scale of zero to five:
1
Significantly strengthened the relationship
2
Somewhat strengthened the relationship
3
Not impacted the relationship at all
4
Somewhat deteriorated the relationship
5
Significantly deteriorated :
N/A
1. With your significant other ?
5%
105
12%
239
16%
330
38%
778
21%
435
9%
186
2. With your children?
4%
73
9%
192
28%
578
32%
658
6%
126
22%
446
3. With other family members?
3%
61
9%
193
38%
788
32%
665
11%
224
7%
142
4. With friends?
3%
54
8%
166
31%
637
34%
707
20%
418
4%
91
5. With colleagues and other employees?
1%
27
4%
83
25%
523
22%
449
19%
390
29%
601
6. With your employer?
2%
36
3%
68
23%
467
16%
339
21%
430
35%
733
24.
Has your condition impacted your decisions on having children?
Yes
394
19%
No
1679
81%
2073
100%
25.
How difficult is it for you to tell people you meet or know about your condition?
I generally don't share it with people.
465
22%
I only tell people I know well.
635
31%
I get exhausted going into the details.
186
9%
I tell my friends but no one at work for fear it will be used against me.
37
2%
When I tell people I have it down to a short summary so it is pretty easy.
319
15%
I always tell people so they have a better understanding and a raised awareness of what everyone who has FMS/CFIDS is dealing with.
275
13%
I would rather not say.
34
2%
Other, Please Specify
122
6%
2073
100%
26.
How much time have you lost from work annually due to your struggle with FMS/CFIDS?
None
232
11%
1 to 5 days
219
11%
6 to 10 days
161
8%
11 to 15 days
100
5%
16 to 20 days
72
3%
21 + days
274
13%
Other, Please Specify
1015
49%
2073
100%
27.
What activitie(s) have you given up in order to conserve your energy?
Working
1030
50%
Movies
497
24%
Plays
327
16%
Ballet/Symphony/Theater
261
13%
Gardening
1138
55%
Housework
1112
54%
School activities
352
17%
Playing sports
1006
49%
Attending sporting events
616
30%
Actively enjoying hobby
1117
54%
Social gatherings with family and friends
1082
52%
Playing with children or grandchildren
678
33%
Other, Please Specify
694
33%
28.
When you indulge in an activity, how long does it take you to recover afterward?
Fast recovery
17
1%
30 minutes to 1 hour
57
3%
1 hour to 2 hours
87
4%
2 hours to 1 day
281
14%
1 day to 3 days
894
43%
3 days to a week
400
19%
More than a week
103
5%
Other, Please Specify
224
11%
2063
100%
29.
Are you being treating for hypothyroidism?
Yes
608
30%
No
1348
66%
Not Sure
91
4%
30.
What type of Thyroid supplementation preparation are you currently taking?
Not Applicable
1280
62%
T3 (compounded)
106
5%
T4 (compounded)
46
2%
Cytomel
33
2%
Synthroid
349
17%
Armour
70
3%
Other, Please Specify
289
14%
31.
Do you belong to a local Fibromyalgia or CFIDS support group?
Yes
157
8%
No
1640
80%
Belonged at one time
241
12%
Unsure
14
1%
2052
100%
32.
If you do belong to a support group, please rate how effective and helpful you find this activity:
Not helpful at all
127
30%
Slightly Helpful
124
29%
Helpful
73
17%
Very Helpful
67
16%
Essential
37
9%
428
100%
33.
Have you ever heard of the National Fibromyalgia Association (www.fmaware.org)?
Yes
1345
65%
No
709
35%
2054
100%
34.
Have you read the book "Fatigued to Fantastic" by Dr. Jacob Teitelbaum?
Yes
330
16%
No
1709
84%
2039
100%
35.
Have you ever heard Dr. Jacob Teitelbaum speak at any support group meetings, health fairs or other gatherings?
Yes
57
3%
No
1989
97%
2046
100%
36.
Please tell us how important these items are in your treatment process:
1
Not important
2
Fairly Important
3
Important
4
Very Important
5
Most Important
1. A Doctor who takes his/her time and listens to you.
0%
7
1%
11
3%
57
31%
624
66%
1337
2. A Doctor who utilizes both prescriptions and nutrition to treat you.
2%
38
3%
54
13%
261
35%
706
48%
973
3. A Doctor's office where the employees are friendly and listen.
1%
14
3%
59
12%
238
37%
744
48%
975
4. The use of the latest therapies to treat my condition.
1%
28
3%
57
10%
205
29%
583
57%
1144
37.
Would you be interested in attending a one day seminar to learn all about the latest therapies to treat your condition?
Yes
1626
79%
No
422
21%
2048
100%
38.
If you would be interested in attending a seminar, how far would you be willing to travel?
Up to 20 miles
582
34%
Up to 50 miles
560
33%
Up to 100 miles
319
19%
Up to 200 miles
162
10%
Anywhere in US
76
4%
1699
100%
39.
If you would like to attend a seminar, please provide your address (we are not collecting any private information.